ArticleClinical transplantation2020
Incorporating patient and caregiver feedback into lung transplant referral guidelines for individuals with cystic fibrosis-Preliminary findings from a novel paradigm.
Article in Clinical transplantation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
10 citing papers in PubMed, 16 citations in OpenAlex.
- Community engagement in health guidelines and other normative products: a methodological review.Bulletin of the World Health Organization · 2025Review
- Personal narratives to support learning about lung transplant for people with cystic fibrosis.Patient education and counseling · 2025Article
- A Qualitative Study to Improve How We Partner With Patients and Families in Healthcare Improvement Collaboratives.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- A survey of cystic fibrosis physicians' views on lung transplant referral in the era of elexacaftor/tezacaftor/ivacaftor.Pediatric pulmonology · 2024Article
- Attitudes toward and preparedness for lung transplantation among individuals with cystic fibrosis in the era of highly effective modulators.BMC pulmonary medicine · 2024Article
- Qualitative Analysis of Perspectives on Lung Transplant among People with Cystic Fibrosis.Annals of the American Thoracic Society · 2024Article
- Quality of locally designed surveys in a quality improvement collaborative: review of survey validity and identification of common errors.BMJ open quality · 2024Article
- Expectations of patients awaiting lung transplantation: A qualitative study.Nursing open · 2023Article
- Patient Experiences and Perspectives of Their Decision-Making to Accept Lung Transplantation Referral: A Qualitative Study.International journal of environmental research and public health · 2023Article
- Take on transplant: human-centered design of a patient education tool to facilitate informed discussions about lung transplant among people with cystic fibrosis.Journal of the American Medical Informatics Association : JAMIA · 2022Article
Corrections and comments
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Authors and funding
8 authors at 5 institutions in 1 country.
Funding
Abstract
backgroundLung transplantation is a common therapeutic option for individuals with cystic fibrosis (CF) and advanced lung disease, yet many individuals with CF are not appropriately referred for evaluation. The present study sought to enhance CF transplant referral guidelines by integrating patient-centered input to identify possible psychosocial barriers contributing to suboptimal referral for appropriate CF transplant candidates.
methodsAs a component of developing the Cystic Fibrosis Foundation (CFF) Lung Transplant Referral Consensus Guidelines, we convened a focus group of lung transplant recipients with CF and two spouses of CF recipients. Each session involved standardized approaches to elicit qualitative, thematic content.
resultsCF patients and caregivers characterized five areas for improvement, which were integrated into formal CFF referral guidelines. These included (a) timing of transplant discussion with CF providers, (b) accuracy of transplant-related knowledge and expectations, (c) stigma associated with the need for transplantation, (d) treatment team transition issues, and (e) social support and mental health concerns. Earlier introduction of transplant, greater details regarding manageable aspects of treatment, and greater provision of social support were all associated with better psychosocial experiences.
conclusionsIntegrating patient-centered input into guideline development yielded important and previously unknown psychosocial barriers contributing to suboptimal transplant referral.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.